I did ask this question on forum for hemangiomas as well, although this would be the correct forum.

Our five year old daughter has generalized lymphatic anomaly or systemic lymphangiomatosis (same thing but the term they use idepends on the doctor). Her case is complicated with blood clothing activity of her lymphangioma (consumptive coagulopathy, chronic DIC). In consecuense her platelet level in her blood is really low, as well some other coagulation factors.

Is there anyone else with trouble of blood clothig or consumptive coagulopathy? How have you/your kids been treated for it and have your doctros been able to get the disorder under control?

This is really lousy situation to be -to have a severe complication for what the suitable treatment is the cure of the underlaying disease and there is no cure nor proved treatment for her disease.

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